Plan KA Days 2&3

Plan Kick Ass is going really well. Today I condensed my plan to these 10 steps and put them on my chalkboard in my room as a reminder:

I've been enjoying a simple egg, gluten free toast, herb goat cheese (with fresh herbs) and tomato for breakfast. This morning I had it with two eggs on the side.

Free range, organic, humane, pasture eggs in a tiny bit of avocado oil.

Delicious!

I made it into a breakfast sandwich yesterday with some lavender sea salt on top.

This morning's variation.

We had friends over last night and put out a healthy spread. I indulged in two Ginger Ales (but no booze) and about two tablespoons of "pub cheese" (that I did not buy, but have a hard time saying no to!) Oh yeah, and I put some brown sugar on my strawberries. Other than that it was all very healthy and actually Vegan. It was also my dinner. 

Guest spread

Also a guest appearance by my Sweetie!

So the food choices are going really well. We went to the movies with a friend today and I said "GET THEE BACK SATAN" to movie popcorn and soda. Just had my water and a few raw almonds. Go me! After we went to Chipotle for lunch where I had a salad with pinto beans, grilled veg and corn salsa. No soda and a few chips. No meat, no cheese. No queso dip. GO ME!!!!

You GO GIRL!

I've been pushing myself to walk a lot more. The stretching feels really good in the morning and my husband has been giving me amazing rubs that are also very helpful for my muscles. I'm trying to push myself, but also listen to my body (Rules 1 and 2.)

Tomorrow I'm going to have a morning push and do some gardening. Then relax the rest of the day and get ready for my three day work week. Wish me luck!

Plan KA Day 1

As I said in my previous post, I am re-committing to PLAN KICK ASS to better my health. Here's how day one went down. In the words of my husband "You crushed it!"

My lunch was high good fats and high protein. Three scrambled eggs with mushrooms, onion and peppers all served up like an open face omelet. No gluten free bread and no cheese. It was delicious and kept me feeling full fo a very long time.

Dinner was very veg heavy. My amazing husband planned, bought and made these beautiful sweet stuffed peppers. I made the brown rice and salad with tomatoes and cucumbers.

I don't have the spoons to make my own salad dressing, but this is the BEST Italian vinaigrette I've found. 

Every morning I still indulge in my wonderful cup of Java. I'm not ready to give that up yet, but I am trying to make that my only sugar for the day. I'm also cutting out cheese except for Goat because it's very low in calories, high in protein, full of good fat and Goats are treated better in my country than dairy cows. So that's just a win all around. My husband minces fresh herbs in it and OH MY! It's amazing.

My snacks have been fresh fruit and these bulk bin beauties. Raw almonds.

We were eating a name brand's "Smokehouse" almonds until I looked at the ingredients. Ack! Always look at the ingredients.

As far as pushing myself physically went, I seriously took that to heart. I walked my puppy girl by myself around the block (a really big deal for me), did about 3 loads of dishes, 5 or so loads of laundry, scrubbed out shower/tub, cleaned the bathroom and tidied up. I laid down for a bit, but honestly felt too full of energy to sleep! 

My body did really well till around 6PM. Then my muscles went into revolt. Cramps and soreness kicked up, but I expected it.

I like Friday to be my "big push" day because then I have the weekend to pull back a little bit.

So far, I'm really glad I made this change. My husband is 100% on board and being really supportive and amazing. GO PLAN KICK ASS!!!

Plan "Kick Ass" ROUND 3!

Medicine has taken me as far as it can go. My team of specialists are now reverting back to the general term "Myopathy" to describe my chronic, sudden muscle fatigue and symptom cluster. I've been told that "It COULD be genetic, it COULD have been cause by my brain tumor, by the Plaquenil, by the Latent Tuberculosis treatment, by my immune system..." I've been spiraling into a serious depression although keeping that "stiff upper lip" and smile on my face on the outside. Well, most of the time. 

But this morning I remembered the wise words of Hippocrates.

I've seen where endless doctors appointments, $20 co-pays to be told "Huh, that's not typical" and test after test has gotten me. Some help, some improvement, but still on a steep decline. 

I woke up this morning and told myself that I had two choices. I can put 70% of my week into fighting this and 30% into work OR I can just keep doing what I'm doing and end up using my chairs all of the time within a few months. 

Maybe I'll still need my chairs in a few months, all of the time, but isn't it worth trying something different? I literally have nothing to lose by trying.

Soooo... Here comes PLAN KICK ASS ROUND 3!!!

(Remember PKA round 1 and round 2? No? Yeah, it HAS been a while.)

PLAN KICK ASS - ROUND 3:

• Push myself in some physical way every day that I don't work. Do something big (like walk the dog around the block), then rest for an hour. Then do something big (like mop the kitchen) then rest for an hour. 
• Listen to my body
• Stretch EVERY DAY!
• Reduce my portion size
• No soda... ever
• Eat fresh and chemical free as much as possible
• Switch to 1 cup of coffee in the morning, then green tea
• Eat more fish and veg, keep beef as a rare treat
• Eat LOTS more veg
• Have lots of good fats (grass fed butter, olive oil, avocados)
• 1 caffeine power drink per day (it really does help my muscles)
• Eat breakfast and small snacks
• Have lunch be my biggest meal of the day
• Take a nap every day I don't work
• Reduce my work days from 4 to 3 (30 hours per week)
• Look into swimming again when I feel ready
• Ask for help, but try on my own first
• 1,500mg CoQ10 a day
• 20mg Baclofen a day (this has been very helpful)
• 2,000IU of vitamin D a day
• Stay on my Lyrica and Cymbalta

It's time to take my health and my body into MY OWN hands. Of course I'll still maintain my doctor's appointments too. I have a new geneticist that is going to do a full DNA screening on me and I'll go through with that (as long as my insurance will pay for it). But I'm not going to just keep searching for answers that science isn't ready to give me yet. It's MY body, MY health, MY mobility and I want to know that I literally tried everything that I can to help myself.

My push this morning was taking this beautiful little lady for a walk around the block with just my own two legs. I can't remember the last time I was able to do that. It was a big push, but felt great.

What the heck body?!?

At 9:30AM this Monday my body decided to freak out. I was at work and suddenly felt zaps in random parts of my body that made my muscles twitch. It felt like being mildly electrocuted. I also felt very weak and dizzy. My vision blurred and I struggled to focus. My face felt more numb than usual and it was a challenge to talk. I held on for as long as I could, but finally texted my husband to come and get me. I was afraid to drive given the dizziness and blurred vision.

My gut reaction was to go to the hospital. Even to call an ambulance as I wasn't sure how far I could walk. But what would they do? What could they really do? I didn't feel like I had experienced a stroke. My heart felt fine. It felt like my Myopathy had suddenly gotten worse for God knows why or how? I have a rare condition and there's nothing the hospital can do about that other than test me for a stroke. It would be a waste of everyone's time.

Instead I had my husband call my doctor and talk to the advice nurse. They said to go to the hospital. I refused, laid in bed and cried. My husband comforted me and made me feel a lot better. All of this was very scary. My little dog also gave me comfort, refusing to leave my side.

She even lurked in the bathroom with me. 

I deduced that I might have a bladder infection and that could have sent my body into "CODE RED! SEND ALL ENERGY AND RESOURCES TO INFECTION FIGHTING!" I started antibiotics yesterday and am feeling a little better today. I hope to go back to work tomorrow.

It's terrifying how fast my muscles can just shut down. How even talking can become a big challenge. I know it was scary for my husband to see me like that too. Chronic illness isn't for the weak! Every day is some kind of new test. I'm so lucky to not have to go through any of this alone.

Swimming in the deep end of life

I love the Ocean. I always have. When I was a little girl I used to spend all day every day every summer swimming and pretending I was either a mermaid or a shark. I love them both equally. The more my arms and legs stopped working the more my love for mermaids grew. I liked to think that I was just a land-locked mermaid and not a disabled woman. Isn't that thought more fun?

Last weekend my husband took me to the "Bubble Ball" at a mermaid convention in our town. Who even knew there was such a thing? You had to come dressed as either a mermaid or a pirate. I was thinking "What's there to do at a 'ball' in a wheelchair?" Turns out tons of stuff!

Me being me I had to dress as a "Princess, mermaid, fairy, shark" and not just a mermaid. "Where's the shark?" You might be thinking? I have 5 gills on my neck. Hehehe.

My husband was "Mr. Smee" from Peter Pan. Smart guy that he is he picked a comfy outfit in the sweltering heat. 

There was a magician who was amazing and looked a lot like "Captain Jack Sparrow" from the Pirates of the Caribbean movies. 

There were games, photo booths, tarot card readings, magic, stage shows and all kinds of fun to be had. I did get a little bit of chair dancing on at the end too. We had a fantastic time. I'm glad I didn't let my hesitation of "going to a dance in a wheelchair" get in the way of me letting my inner mermaid (princess, fairy, shark) shine!

Sex and Progressive Disability

It seems as if every article and blog on the internet that addresses sex and disability does so from the point of view that the person has always been the way that they are. I have found hardly any information in my scouring that talks about what happens when you have a progressive disability or illness. Which is very sad because it has a HUGE impact on your sex life.

My neurologist told me last week that my issue (COQ6 gene mutation that causes COQ10 deficiency that causes Metabolic Myopathy) is progressive and degenerative. It was something I suspected but it was still hard to hear. Although it did light a fire under my butt (pun intended) to try and find something that would help my sex life.

My husband is amazing and is always open to trying anything that might help me, even if it costs us money. I've tried a vibrator in the past, but I don't think it was strong enough for my muscles. We also have a "wedge pillow" that is amazing. I can't speak highly enough of support pillows with any kind of muscle condition and intimacy. So although I still was enjoying sex, I had been unable to have an orgasm for a long time.

One of my issues is muscle cramps and spasms that happen most of the time. My neurologist recommended I try CBD for it and said it would help. A friend of mine from my Muscular Dystrophy support group suggested I try a tincture. One trip to our local dispensary (it's legal in my State) and $80 later and I was equipped with something that has been helping me. I thought it might also just help my orgasms?

My husband and I made a trip out to a very female forward sex store called Good Vibrations. They helped me find a new vibrator that could be helpful, along with some other muscle support devices to try out. BINGO!!! A stronger, more adjustable, larger vibrator did the trick. My orgasm has changed a lot though and felt very different. But I was still happy to get there.

NEVER GIVE UP! My tenacity paid off once more. Don't be afraid to experiment and invest some money on your sexual pleasure. It's important and helpful for your mood.

(I'm not affiliated with any of the links and received no compensation for sharing them.)

Letting go

Part of adjusting to life with a disability is letting go of what you can no longer do. Mourning those things that your body just can't do anymore. For example, I can't do the kind of travel that my husband and I used to enjoy. No more hiking down cobble stairs into a secret well (like is pictured here in Sintra, Portugal). 

Yesterday I took a short bike ride to see how my body did. It has been a very long time since I tried to ride. I love my bike and it used to make me very happy. As I had feared my muscles did not like my bike. It's just too hard now to get it to go where I want and to balance. Time to mourn not being able to use my bike anymore and let it go.

My awesome bike and fantastic helmet two years ago.

A funny thing happened though when I got off my bike and in my wheelchair yesterday. I felt relief. I also had that excitement feeling I used to get from my bike, now just from my wheelchair. Like my bike it's a tool to take me around. I also get to feel the wind on my face, just like on my bike. But unlike my bike it's a tool that I CAN use. That's a good feeling. I'll be selling my bike and hopefully the next owner loves it as much as I did. 

But having a permanent disability doesn't mean I still can't do fun things. In fact there are loads of amazing things that I CAN still do!

I can eat fresh berries in the summertime!

I can still snorkel. Which is a life-changing experience. 

I can still swim! Or float. Depending on my energy level. Water is still my friend.

I can still travel and have adventures with my husband.
They're just different kinds of adventure now. 

I can still enjoy the beauty of nature.

I'm very lucky!